Ep 133 Rosemary Kennedy's Story: Autism and ADHD. An Enlightening Discussion with her biographer Kate Larson Part 1

Do you ever wonder what it's like to unravel the secrets of a life long hidden from public view? Join us today as we sit down with acclaimed biographer Kate Clifford Larson, author of Rosemary - The Hidden Kennedy Daughter. Together, we embark on an emotional journey through the life of Rosemary Kennedy, beginning with her birth amid the Spanish Flu pandemic. We dive into the challenges Rosemary faced due to her intellectual disability and how the Kennedy family navigated these difficulties in a time when resources were scarce.

Kate spent six years in the archives, piecing together Rosemary's story. Her groundbreaking findings suggest that Rosemary might have been on the autism spectrum and had ADHD which was unbeknownst to herself, her family, her physicians, and teachers. This revelation presents a new perspective on the hardships the Kennedy family had to overcome in their quest to provide the best care for their daughter. We also discuss the power and sometimes the struggle of storytelling, particularly when it comes to chronicling your experience of chronic pain. Tune in and be prepared to be moved by a poignant tale of resilience, determination, and the undying spirit of a family. This episode isn't just about history, it reflects life's trials and triumphs.

The fibromyalgia starter pack  categorizes the episodes in a way that is more accessible for those new to fibromyalgia.

Transcript

Speaker 1: 0:48

During this series we get a chance to talk with the author of a biography on Rosemary Kennedy. Kate Clifford Larson is a historian with the PhD in history. She has published several books, including Walk With Me, a biography of Fannie Lou Hamer, harriet Tubman and Underground Railroad National Historic Park, as well as Rosemary, the Hidden Kennedy Daughter. We are privileged to hear her first hand sharing of Rosemary's life. We just did a series on Rosemary's brother, john F Kennedy, who sadly struggled with chronic severe pain, and during that research I discovered that he had a sister. Although we don't know about having chronic pain, she did have significant episodes of distress in her life. A modern assessment of her struggles indicate that she very likely may have been on the autism spectrum. That's important and relevant to the discussion on fibrologia, because we are learning that many people who are on the autism spectrum also struggle with chronic pain. Remember that while I am a doctor, I am not your doctor. All signs and symptoms should be discussed with your own individual physician. And now on to this week's episode. For many of you who have listened to the podcast, I encourage people to write down their story. Most of you have never written it as a biography, although many of you may find that you have enough content to fill a whole book. I've mentioned on prior episodes that it's important to write down your history, your pain zone, so that not only you can help put clues together to help yourself understand what you're going through, but also to help your healthcare team. It's unlikely that you have written an autobiography of your life. If you have, I'd love to hear from it. Maybe we can have you on a upcoming podcast as well. But we hear from Kate Larson, as she took the time to share with us some of key elements from the story of Rosemary Kennedy. So put on your seatbelts as we take a trip back in time and welcome Kate to the podcast. We start off the episode where I ask Kate to share how much time she spent in researching Rosemary's life.

Speaker 2: 3:41

Oh my gosh, it was actually. The book took from 2008 to 2014, plus it came out in the fall of 2015. It was interrupted for a little bit. I did many hours of research at the John F Kennedy Library, many months going there, but it was interrupted because my son was diagnosed with schizophrenia and our lives just halted and I had to devote full time to taking care of him and making sure he was safe and healed in whatever way they could do that.

Speaker 1: 4:12

I ask Kate how much words excluded from the book?

Speaker 2: 4:17

Actually not a lot made the cutting room floor, honestly, because there isn't a whole lot at the library. There is a lot available and it's in the book, but there were things that were still withheld in the archive that, because of HIPAA regulations, I wasn't allowed to see, and other letters and things like that that I think the family feels very sensitive about, so I wasn't allowed Probably about I don't know 250, 300 documents I probably could not see. But that's okay. I respect the privacy of someone like Rosemary and the family who struggled, and so it is what it is. Maybe in 20 years they'll release some of that information, but I don't know what more it's going to do to enlighten what happened to Rosemary.

Speaker 1: 5:07

So what drew you to writing a biography about Rosemary Kennedy?

Speaker 2: 5:14

First of all, I just do biographies of American women. So that's part of it. And it's funny because my topics, my subjects, just they come to me and then I feel something and then I go with it. The Harriet Tubman was the big passion. It still is. Mary Serrat was the one-off because I didn't know that I would be writing about a guilty woman who was an awful person when I started the project, because I thought she was wonderful and innocent. But she was not. But when Rosemary died in January of 2005, there was a beautiful obituary in the Boston Globe and I read it and I thought, oh, what a sad life. And of course, growing up in New England, I knew about the Kennedys. I had read several of those Kennedy biographies, so I knew a little bit about Rosemary. And I thought, because I live outside of Boston, I thought, well, just go to the Kennedy Library after I'm done doing my Mary Serrat work and I'll see what's there and maybe I'll write an article for a magazine or a journal about Rosemary. And that happened in 2008. And I went to the library and I was fortunate to walk in when I did, because they were beginning to open Rose Kennedy's diaries and journals and some of her papers. The Kennedy family had deposited a tremendous amount of family and Joe Kennedy business materials back in the 90s. But with that gift came a strict schedule of when certain portions of that archive would be released to the public. And I happened to be there when they were opening a lot of Rose Kennedy's materials and there was Rosemary letters to and from her, mentions of her and Rose's diary, the children writing back and forth to each other. And that's when I knew that I had more than an article, that I could hear Rosemary's voice. I had that voice and I felt I could write a biography with her at the center of the story. So that's what happened.

Speaker 1: 7:19

So, starting at the beginning, tell us about Rosemary.

Speaker 2: 7:26

She was a lovely child when she was born. It was a difficult birth. Rose had a nurse attend her while they were waiting for the doctor good to arrive at their home in Brookline to do a home birth and he was delayed at the hospital because of the Spanish flu. It was 1918 and there were thousands of people sick in the city and dying and he couldn't make it fast enough. Rose was in labor with her third child and the nurse had been trained to delay Labor as much as possible, to delay birth, because the instruction manuals for nurses said you really want to wait till the doctor arrives, and that's what the nurse did. She held the baby back in the birth canal until the doctor arrived and Rose estimated it was about two hours. Now I don't know if that caused damage to baby Rosemary. I suspect it did. I'm not a doctor, I don't know, but it just seems like a pretty horrific thing to do. But Rosemary was born and Rose and Joe were thrilled because she was this beautiful little baby girl who didn't fuss, she didn't cry a lot, she just was sweet and they thought, wow, this is fantastic. And so a year later they had another child, kathleen, who they called kick. A year after that it was Eunice. In the meantime Rosemary is beginning to grow and they noticed that she Seemed to be slower than her older brother's Jack, who would become our president eventually, and Joe, the oldest sibling, joe Jr and that she was much slower to sit up, much slower to crawl, to stand up, to walk, to talk all those things. And it's interesting because in Rose's memoir she said that she and Joe just thought she's a girl. Girls might be slower than boys, so they just didn't think in much of it until kick came along. And then Eunice, who developed very quickly. She's chasing after four older siblings. She's up walking and talking earlier than anybody. And they began to recognize that maybe something wasn't quite right with Rosemary. She had a difficult time Peddling a tricycle. She couldn't figure out how to steer and pedal at the same time. Steering a sled on a snowy hill here in New England. She couldn't Figure out that skill of left moving her hands that way, leaning her body, and sailing a Kennedys are so known for their sailing. The kids all learned how to sail as very young children and she had a difficult time. She couldn't figure it out. So they recognized that she was delayed a little bit. And when she went to school, kindergarten, that became very obvious because she was not at the same level as her peer group and she was held back in kindergarten at least once, if not twice. Look, kennedys kept having more children. Those children developed a normal scale schedules or accelerated schedules and the older Rosemary God, they recognized there were some serious delays going on, and intellectual and physical delays as well.

Speaker 1: 10:43

I took the time to read through the book on Rosemary and was searching for the more clinical Picture of Rosemary to bring that to the listeners, and I am going to Share some salient history that I think is relevant for our learning and understanding. Her development became a severe cause of concern for her parents. For example, rosemary stuck out her tongue during Easter dinner at the Kennedys grandparents home in Winthrop. Rose wrote I often wondered if Jack was neglected, because when he was young I gave her a great deal of attention, thinking that I could circumvent this Affliction she had, or I could have her so educated that it wouldn't be noticed at all, or she could still go on with the other children in a normal way. Rosemary could not compete physically or intellectually in the Kennedy family. Rose went on to say when we have many children we cannot understand why they are all not alike. Rose would later muse especially if the oldest ones are brilliant Scholastically or outstanding in athletics, then when the younger one comes along we naturally expect the same kind of thing and we become critical and impatient if this is not the case. But Rosemary's limitations were far more complicated than mere personality differences, and the pressure to mold her to Expectations were heavily on her parents. To Joe, being different meant being excluded from clubs, parties and business deals. In the fall of 1923, when Rosemary was five, she was enrolled in the kindergarten at Brookline at the Edward Devotion School, just as her brothers had been. Rosemary appeared deficient, a label teachers and school systems were beginning to use to describe children lagging behind their peers. Rosemary had no other educational or therapeutic options at that young age. Rose continues to share the efforts Rose and Joe went through to help Rosemary.

Speaker 2: 12:59

They struggled to find help because in the 1920s they didn't have resources in schools to help children who might be delayed or have different abilities. It just wasn't a thing. So they struggled to find people that could help them. Help Rosemary.

Speaker 1: 13:17

So, reading through your book and interviewing you at the time of this interview, I just finished the book over a weekend of three or four days ago and so it's all fresh in my mind and I think the book was published 2015 and obviously probably, like you said, finished it in 14 and went through some editing or whatever it. So we're talking nine years, but it's like having another child when you're going through somebody's life, so you probably have it somewhat tattooed in your brain her story. But she had developmental delays and they used to term mental retardation and they're all different terms that we go through and we don't use those terms. And part of one of the things that jumped out to me, looking at her life, and that you're a medical expert and, by the way, you're my first non-medical expert that I've had on here but one of the things that we do talk about and I've talked about in the podcast and just had a patient today and I say, before you go to a doctor and we deal with a lot of chronic pain issues, but write your story down and narrative medicine, especially for chronic issues, especially chronic pain issues, because it can make go back to childhood and what was your development like. But what jumped out to me and why I thought was very interesting is I'm learning more about the autism spectrum disorder is that she fits so much of the pattern. One of the fancy medical terms for lack of coordination is dyspraxia that ability to just naturally maneuver a sled, catch a ball, throw a ball and a pedal a bike things that we take for granted. And she tried to get through kindergarten I think she was held back and then pushed first grade and then, I think, was held back and back then the had some a lot of caring going on it. This is a real tragedy in so many parts, but agreeing to a lot more sympathy or empathy for Joe and for Rose, because the tragedy at the end in a sense was good hearted, impulsive on Joe's part, yet somewhat long time striving to help their daughter quote be normal. And I didn't realize as I've learned more about the Kennedys. He was like the top 10 richest person in the country at the time. He timed the markets perfectly, had some insider trading that massively increased his them and then pulled out of the what we call the great depression, be short sailed and got what made money off of that and then, post depression, did well, what was it like to have a child back then? They called mentally retarded development to the delayed before anybody, let alone a family that was well off so it was quite difficult to have a child that was different disabled, intellectually handicapped, etc.

Speaker 2: 16:41

Because there were no resources and there was no tolerance or understanding or compassion either. And when Rosemary was becoming a toddler and a young child, they recognized they were something different and people recommended that they put her in an institution, which happened to a lot of children with disabilities. They were put in these huge institutions that we now were horrific place. Many of them were horrific not all of them were horrific, but many of them were and they were like nope, there's nothing better than her own family. She's going to stay with us. So I admire them for going against the grain, for the and the advice at the time that they were going to keep her at home and they were going to expend whatever resources they had to try to get people in to help her, even though no one knew what to do other than care for a person like Rosemary. There were no real protocols and educational materials or techniques or theories, physical therapy, mental health treatment none of that existed, really informed for children. So they struggled and they spent their money trying to do what they thought was the best for her one of the tragic things they did because they had the money is that they eventually decided to send her away to private schools and that took her away from this cocoon of a family, her siblings, her parents, the house, the neighborhoods that they lived in, and she fell apart. She found it very difficult to live separate from them.

Speaker 1: 18:15

Rose feared that if Rosemary went away to school for developmentally delayed children or these institutions, her greatest potential would not be reached. In this Rose was ahead of her time. There was little thought during that era that there could be any positive educational reason to include an intellectually delayed child in a public school classroom. Rose would have to meet the challenge herself that supports that children and adults often see and obtain now were not routinely available to Rosemary or other children like her. At the time, rosemary's kindergarten teachers refused to promote her to first grade. I don't know how to cope with the situation. Rose would write years later. She went on to say I talked to our family doctor, the head of the psychology department at Harvard and a Catholic psychologist who was head of a school in Washington. Each of them told me she was retarded. Mental retardation and arrested growth were not well-defined terms then. Doctors and other educational professionals used them broadly and carelessly to describe various intellectual and physical conditions. The diagnosis provided little direction for therapeutic options and offered scant hope for what Rosemary's future would hold. What to do about her, where to send her, how to help her, seem to be an unanswered question. Rosemary would repeat kindergarten the following year. Iq testing was in its infancy. Then we don't know exactly what Rosemary's score was, but the Otis intelligence test was available and developed by psychologists and statistician. Arthur Otis Rose wrote that I was told that her IQ was low, meaning that Rosemary's mental age was lower than expected for her chronological age compared to other children. What the actual score was remains an important question Today. An IQ test of 70 or below denotes significant intellectual impairment, although we know that with specialized therapy, education and stimulation, some individuals will improve their scores and achieve the skills necessary for leading independent, productive lives. It's also important to recognize, as we've heard in the interview with Dr Barry Prasant from the uniquely human podcast and book, that for many with autism due to struggles with language and expression, dyspraxia, writing, etc. The IQ score doesn't fairly represent someone's abilities. It's also important to note that for those who do not have their ADHD treated with stimulants will also show a lower performance on IQ testing, which is significantly increased with treatment with stimulant medication. Though Rosemary had repeated kindergarten at Edward Devotion and then moved up to first grade in the fall of 1933, her learning disabilities also forced her to repeat that grade. The transition to school in Riverdale was fraught with frustration and anxiety. Already labeled slow and delayed, rosemary needed more demanding educational support. Rose struggled to accommodate her while helping the rest of her children adjust to their new home, school and neighborhood. Rosemary seemed much shyer and less polished and coordinated to those outside the family than her hyperactive, outgoing and competitive brothers and sisters. Her soft featured, prettiness, seemingly happy disposition and carefully disguised intellectual disability masked the seriousness of her condition. Rose made sure that, despite Rosemary's disabilities and the extra attention she required, rose and Joe were determined that Rosemary would be treated just like the other children. Expectations that she meets the social, academic and physical demands placed before her as best she could became the hallmark of the Kennedy's family's determination to keep Rosemary from being viewed as different. She struggled with the simplest of elementary studies with her sister and classmates that were already mastering reading, writing and math. She tended to write from right to left rather than left to right, often called mirror writing, a clear indicator of developmental disorders. She struggled to shape her letters. As she grew older she would fail to master writings in longhand. Her spelling was hit and miss, sentences were often deficient and she could only write in straight lines using line paper as a guide. A Riverdale classmate recalled that even though she'd been placed at least two grades behind her age group at the school, rosemary just plugged along with the rest of us. Placement in the Riverdale classroom with younger children did not help, so Rose and Joel moved her from school. The lack of coordination was apparent and she could not keep up with the work. Rose organized scores of private lessons and tutors to work with Rosemary at home so she could they hoped advance with her age group through school. She had difficulty playing tennis at the level for siblings and even younger siblings. She even took dance lessons which made little difference to her core coordination and left her still heavy on her feet. She could not cut meat on her dinner plate. The food was served to her already sliced. Her inability to decode the difference between left and right may have been a sign of dyslexia. The developmental disability may also have explained her limited capacity to spell, to correctly form letters and to master directions. These skills require concentration and dexterity beyond her capabilities, no matter how much tutoring she received, however, a diagnosis of dyslexia at the time was improbable, let alone getting help with treatment. Dyslexia, however, did not explain Rosemary's other difficulties and limitations, including more severe but undiagnosed impairments and developmental problems. Rose took her to the experts in mental deficiency, but their assignments and recommendations discouraged Rose. The specialist told her that Rosemary had suffered from an unspecified genetic or uterine incident or birth accident. Some of Rosemary's siblings believe she also suffered from intermittent epileptic seizures. Her sister, eunice, remembered sudden and hurried calls to the doctor who would rush to the house and administer injections and medications to Rosemary I think she was partially epileptic as well. As retarded Eunice calls, I remember at the Cape the doctors came in, gave her shots and then disappeared. It's unclear if she was having real seizures, which occur much more commonly in those who have autism, or if she had pseudo seizures, which are spells that are not seizures as measured by brainwaves but often are triggered by high levels of stress. Rosemary's father, joe, was trying to get a doctor to treat and cure her. He offered to purchase a new ambulance for the hospital if the doctor would take Rosemary as a patient. The telephone call ended abruptly. Joe investigated the personal doctor of one of the film company's director, dr Henry J Byler. Dr Byler advocated a therapeutic diet as an alternative to drug therapies to cure various illnesses. This is not uncommon to what was happening in more modern times, as there was a hope that you could cure developmental struggles and likely with Rosemary on the autism spectrum by changing diet. Like many other Hollywood stars, swanson had followed this regimen and believed he held the key to lasting good health and mental well-being. Now, eating a healthy, whole-food, plant-based diet has so many benefits. But, to quote, cure an autism spectrum doesn't have the evidence to support that. The lack of social interaction with other children outside her home denied her a typical childhood experience. Watching her siblings go off to school every day was difficult for her. Despite Rose and Joe's effort to treat her as if she was not impaired, rosemary had difficulty understanding why she was treated differently than other children. With Rosemary's disabilities becoming more evident in the gap between her and the other girls, her age ever widening, rose and Joe reconsidered advice to take their daughter to an institution. During Rosemary's childhood, the distinctions between different types of disabilities intellectually and mentally were rarely made. Instead, the different nozology of the day or classifications were idiots as the most severely disabled and classified as those with an intellectual capacity of a two-year-old or younger. Inbysills are those with a three to eight-year-old mental capacity. Morons are those with eight to 12-year-old capacities. These labels limited society's understanding of people with intellectual and physical disabilities. They lacked a nuanced interpretation of the causes and conditions of various disabilities, including the many types of simple and complex learning disorders. Within this limiting framework, mentally disabled and learning disabled children and adults had few options and bleak prospects for education and leading autonomous or semi-independent lives. Many institutions, both private and public, became warehouses of the insane, people with disabilities and the addicted. There were hundreds of state and private hospitals and homes for the mentally ill and the mentally and physically disabled across the country. Wealthier families like the Kennedys could afford private institutions, where those with fewer financial resources often turned to state-run or private, charitable or church-owned schools. One of these state-run hospitals, called Ferdinand the School, was an notorious Massachusetts state hospital described as purgatory by some Dirty, dark and disease and rodent-infested. Many institutions for the insane and disabled provided little more than shelter and some food. Medical care with spotty, occupational therapy and educational vocational training were non-existent. Patients and residents sometimes spent their days and nights caked in excrement. Orderlies, doctors and guards sometimes raped women residents, while others were forced into the prostitution business organized on institutional grounds. The intellectually disabled were often housed side by side with the mentally ill, the suicidal, the alcoholic, the drug addicted and those judged criminally insane. Cries for attention or relief from suffering and pain usually went unanswered. Physical and emotional abuse were rampant. Dehumanization and intimidation are commonplace. Rose's consultations with various doctors, psychologists, psychiatrists, academic specialists and religious leaders took on a new urgency. None offered Rose what she thought was best for Rosemary, making her terribly frustrated and heartbroken. Rose was accustomed to controlling her children's social and intellectual lives and she was determined that Rosemary would not be separated from the family. They believed in. Rolling her in nearby private schools provided her with more benefits than institutions for the mentally disabled would Both of them understood that socially elite circles of Boston, new York, europe and elsewhere, the pressure to institutionalize Rosemary A choice many of their similarly situated adult counterparts made for their disabled children would be tremendous. That's where we are going to end this week's episode. We will continue this series and discussion on Rosemary Kennedy's life. We can see that she had developmental delays, she had struggles and we hope that we can learn from her story. If you have any feedback or comments about this episode or series, or about future ideas for podcasts, or just want to send a note of appreciation, please email me at drmichaelens at gmailcom. Until next week, go team. Bye, bro, you.